Long Beach woman holds first walk for pulmonary hypertension

LONG BEACH >> In 2008, Long Beach resident Ornah Levy nearly died of pulmonary hypertension because of a misdiagnosis. But she fought back and Saturday afternoon hosted the inaugural PHriends4Life Race of Our Lives Walk at Marina Vista Park in Long Beach.

More than 40 people walked or rode electric scooters to bring awareness to a rare disease that makes simple tasks arduous.

“To me it is incredibly meaningful because every step that (most people) take is easy, but every step I take is different,” said Levy, 46, who weighed 493 pounds before she was correctly diagnosed but now weighs half that. “For me to be strong enough and well enough to put on an event is unbelievable.”

Levy, a Cal State Long Beach graduate, is the founder and executive director of PHriends4Life, which has teamed up with the Pulmonary Hypertension Association to bring awareness to the incurable and often misdiagnosed heart and lung disease that causes the narrowing of the pulmonary blood vessels.

Participation in Saturday’s event was free, and nearly $1,000 in donations were collected online and in T-shirt, snow cone and raffle ticket sales.

Valet parking was available for those who have difficulty walking, and Long Beach Blues musician Bernie Pearl performed in honor of those who participated.

The funds raised during the 1-mile walk or scooter ride will go to the PHA. Some of the money will be designated for a team of four women doctors who plan to bicycle in June from Oceanside to Maryland in the annual Race Across America to help bring awareness to the disease.

Five years removed from a life that was spent on the couch or in a bed because of extreme exhaustion, Levy said she would have never imagined walking a whole mile. The walk from her driveway to her house was often a struggle.

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“It’s become my life’s purpose to find a cure for this disease, so that people don’t have to suffer like we do,” she said.

For Carl Hicks, vice president of PHA, it was the loss of his 26-year-old daughter Meaghan that motivated him to get involved after seeing her fight the disease for 13 years.

“The doctor said, ‘I want to talk to you around the corner, sir.’ So I went around the corner and he proceeded to tell me that Meaghan had less than a year to live,” said Hicks, who was visiting from Maryland to walk in the event. “But he didn’t understand how tough she was.”

Medication for the disease didn’t go on the market until 1995, one year after Meaghan was diagnosed, and there still isn’t medication suitable for children, Hicks said. And the expenses are enormous.

“One of the biggest problems we face are the massive medical bills because of the multiple hospitalizations and the drugs that are very expensive,” Levy said. “By the time you’re done with everything, you are spending several hundred dollars a visit and thousands every few months.”

Another hurdle is identifying the disease.

“Because it is so rare, doctors are often unaware of it and don’t think to look for it, so most people with this disease have scary stories of misdiagnosis for years, before finally receiving the proper treatment,” Levy said. “I have a PICC line in my arm, with a 24-hour-a-day infusion of IV medication into it to keep me alive. But, I AM alive, and that’s what matters!”